3girls4me

Hi Twinsis....

 I can certainly relate to how you feel, and believe me, it's a normal reaction!   Yes, your DCIS is small, but as your last statement was "how do I know that's all there is?", the answer to that is, you don't!  And neither do the doctors!    You really must go with your GUT feeling, and the decision you can live with.   Would you rather live without your breast, or the worry that you didn't treat it agressively enough.

For me, my DCIS was undetected.   Found it "accidentally" when a benign lump was biopsied, and they found DCIS in the cells.  Turned out it was multi-focal (which of course also undetected), and ultimately my decision was for bilateral.   And my "good breast" had ADH bordering on DCIS.  Also undetected by mammo or ultrasound!  I didn't have an MRI  because I had decided on bilateral, but now I kind of wish I would have had one.

As others have said, no one can make this decision except for you.    My advice would be to take some time to really get in touch with your feelings to allow you to come to a decision.  I know all the information and decisions can be overwhelming.   But DCIS is not life-threatening, and you have some time to think it over.

Personally, I'm glad I had bilateral.  But it is not without its downfalls as well.  Yes, a lot of sensations are now gone, and I still worry about recurrence.  And I sometimes wonder if it was overkill.  But all in all, I feel I made the right choice for me.  

Hi there!   Glad you posted this question.....I had my bilateral (implants) one year ago September.  I had pure DCIS, and no tamoxifen or any further treatment needed.   I was advised to see the oncologist at 6 months.  I did that, and he took blood work and did physical exam.   He pushed tamoxifen a little bit on me at that time, which surprised me.  But we agreed it wasn't of much benefit vs. risks.    He then said he'd order blood work for me and I can see him "as I wish".    HA!  I thought that was funny.....I wish to NEVER see him again!   I'm debating whether to make appointment now (another 6 months) or maybe wait a year.  I don't see much benefit in going now, but an annual appointment sounds good.    My oncologist said he does not do mammograms on his recon patients because there's nothing to see but an implant.

I have my regular physical with my primary doctor this week and am going to ask what she suggests.   I think you'll find a lot of women are told different things as far as follow up.   Basically I was told that unless I'm having symptoms of something like pain, not to worry.   But I do question it!

LOOK NO FURTHER GALS!   The absolute BEST and inexpensive thing I've found to protect the nipple are good ole Dr. Scholl's callus cushions!    I got this tip from Lillie Shockney at Hopkins, and they are GREAT!   They are a perfect circle, with perfect size circle already cut out, so you don't have to cut anything out, they're ready to go!   And they're already sticky (I stick two together), and was taping them on with bandage tape at first, but since my stitches have healed, I just stick them right on to my skin!   They come in packs of 8 for about $2.85 at Wal Mart, and since I use 4 at a time, one "set" will last me about a week.  The stickyness goes away after a while, so then I tape them on.

 My PS recommends protecting them for 3 months.    I'm just over 2 months now.  I will be SO glad when I don't have to do this everyday anymore, but the callus cushions work GREAT!  Quick and easy!  And cheap!   I can't believe people would actually pay the $1700 for those nipple guard things! 

Reconstruction all the way!!!!!

 I'm currently one year out from my diagnosis, had bilateral mast for DCIS, and hit many "snags" on the way to reconstruction.   I just had my nipple surgery 8 weeks ago, and am thrilled with my results!   I can't imagine waking up every morning with a flat chest, or having to deal with a prosthesis that makes you hot and sweaty (I live in California).   Not to mention the lack of self confidence and the self conscious feeling during "sexy time"  with my husband!   Reconstruction gives the much needed emotional boost of feeling "whole" again after all that us girls go through after a mastectomy.   My PS has told me that that's why she got into reconstructive surgery, because it is very rewarding to her to see what patients go through and be able to give them their lives back.   That is truly the goal of reconstruction.  For me personally, I never second guessed that I would want it.   Maybe age has something to do with it too, because I was 36 at diagnosis.

The drawback of course with implants is that something can go wrong in the future, and I accept that.   I would have done my own tissue if I would have been a candidate for that, but I was not.

Hi Muffy,

 I got my nipples done about 6 weeks ago.  I just bumped up my post for you to see  its "A Happy Nipple Reconstruction Customer"

First of all, I TOTALLY understand your thoughts!   They're all valid.   Mine was not the exact procedure as yours, but I had a lot of your same feelings.  I was under general during surgery, surgery done at hospital.  I DO have alloderm as well, by wasn't used for nipples.   I'm not creeped out by the alloderm.   I think all the "stuff" is out of the tissue or they wouldn't use it.  Frankly, I'm more afraid of germs on the surface that we can catch.....as I caught  STAPH infection from hospital during my mastectomy, which set me back 3 months on my reconstruction.   I wouldn't worry about the alloderm.  Its' been used for a LONG time.

My nips were about 1cm after surgery.  They've flattened out a little since then, PS says they will flatten out even more.   I've been instructed to keep them protected for at least 3 months.   So I've been using callus cushions that work great, and I keep them on there 24 hours a day.  Kind of a pain, but I don't want them to flatten out anymore than they naturally will.  But I don't really want them as big as they are now either.  I sleep on my stomach too, but I've adjusted and kind of sleep on my side now.  I don't put any kind of ointments or anything on  them.   I barely saw any stitches too, they're all "underneath". 

I have VERY thin skin as well.   I don't think mine could be re-done.   In fact, my PS thinks I might not be able to get tatooing done because my skin is so thin.   This doesn't really matter to me.  I'm very fair skinned, and the nips are a light pink right now, which looks fine. 

Mine are completely symmetrical.  PS did a fabulous job.  No matter how I hold them, they match.

Your anxiety is very understandable.  As my PS put it at my pre-op for nips, some people have more anxiety over this surgery than others because they've been "done" for a while, and returning to the doctors office and gearing up for surgery brings back the "old" feelings and feeling like a patient again.   I'm so glad I didn't back out.   Having the nipples bring a sense of completion and makes the breast looks real.   Now I don't see my scars when I look at myself, I see the nipple.

Good luck to you!

Congrats on making your decision!   In my opinion, that was the most grueling part of this whole thing.  Once I made a decision, I felt much better.    I like the advice mentioned above....take this time to take care of yourself and do things for you.   Don't second guess yourself.    Rest assured in the fact that you are taking the most aggressive approach possible, and you won't have to worry down the road about "should I have had the other one removed as well?"

 My one year anniversary of my bilat/w recon is this Friday, the 12th.    I truly can't believe how fast the year has gone, and how much I went through it that time.    I hope it goes as quick for you!

Hi again,

Only had about 3 stitches removed from center part of areola, didn't feel a thing.   And the rest of the stitches are absorbable, and all underneath the skin, so I can't even see.

I was allowed to take a shower after the mast right away because my PS uses some kind of fancy "super glue" instead of dressings, which makes a protective coating over the incisions.  But with the nipples, I couldn't shower for a week mostly because of the "pressure" of the water hitting the nipples and drying them off would cause too much friction.  Don't want to knock them loose!   So I had to just sponge bath and wash my hair in the sink!

Count me in the bilateral club!

I had DCIS found "accidentally" in one breast, was multi-focal and after 2 lumpectomies, and 3 opinions, all said mastectomy.   It was always my gut feeling that if I was going to do one, I'd just do both!   For many reasons, #1 being that I didn't want to spend the rest of my life worrying about the other one, and going through the stress of being carefully screened all the time.  And, since imaging didn't find my DCIS, I was scared something else might be "missed" some day.   And, turns out, in my "good" breast, they found ADH!   So I'm glad I did what I did.

 Also, if you're going to have reconstruction, having both done results in a better "matching set"!  :o)

Its really good to get others opinions and hear what others have done.   But, its really best to try and just quiet all those opinions and really think about what YOU what to do, and what feels right to you.  Its your body and ultimately your decision.   Go with your gut feeling, it is NEVER wrong.  And even after you make your decision, people are still going to give you their opinion and what they might have done, which gets a little irritating.  So just be comfortable with your own decision.

Nipples are the icing on the cake!   I'm SO happy I did mine!   I was like you, on the fence for a while, asking myself did it really matter and did I want another surgery?   Almost chickened out, but SO thankful I didn't!   It's a SUPER EASY surgery (I had the twist method), and the results are phenomenol!   I feel so much better when I look at myself now, they really do look real!   I actually do forget about the breast cancer a lot now, instead of being constantly reminded that "something is missing".

Go with you gut feeling!

Hi there!

Fibroadenomas are nothing to worry about........I've had 3 myself.   First one was found 2 years ago, had a mammogram, they "suspected" fibroadenoma, but biopsied to be sure, and it was.  Said I could leave it be or take it out.  I took it out.   Then a year later, found another lump on opposite breast.  Had another mammo, looked IDENTICAL to other fibroadenoma, again biopsied it to be sure.  Sure enough it was a fibroadenoma, BUT, DCIS was found in the exact area that never showed on mammogram!  If not for that fibroadenoma, I may never have found my DCIS!   So I LOVE fibroadenomas!  ha!    Anyway, given your history of DCIS, I'm fairly certain that DCIS and fibroadenomas are not related.   How old are you?  Fibroadenomas are very common in younger women (I was 36 at the time).  I wouldn't worry too much about it.